Alisa Brownlee, ATP, CAPS blog offers recent articles and web information on ALS, assistive technology--augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve the quality of life for people with ALS.
Email--abrownlee@alsa-national.org.
Any views or opinions presented on this blog are solely those of the author and do not necessarily represent those of the ALS Association.

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Thursday, December 29, 2011

Noah Rahman has moderate Cerebral Palsy affecting his communication, cognition and upper and lower body movement. When he turned two, his language, cognitive abilitity and fine motor skills were diagnosed by a developmental specialist as being at least 12 months behind. Then Noah got an iPad.
Four months later, his language and cognition were on par with his age level. His fine motor skills had made significant leaps.

Today, the three-year-old (pictured at right with his father) spends an hour or two on his iPad each day. He switches his apps between reading and writing in English, Arabic and Spanish. In the fall, he’ll enter a classroom of five-year-olds. “The iPad unlocked his motivation and his desire because it’s fun,” says his dad Sami Rahman, co-founder of SNApps4Kids, a community of parents, therapists and educators sharing their experiences using the iPad, iPod touch, iPhone and Android to help children with special needs.

SNApps4Kids taps into a burgeoning trend for people with disabilities. Touch devices — most notably the iPad — are revolutionizing the lives of children, adults and seniors with special needs. Rahman estimates some 40,000 apps have been developed for this demographic.

“Touch has made it exceptionally accessible — everyone has an iPad, everyone has an iPod,” says Michelle Diament, cofounder of Disability Scoop, a source for news relating to developmental disabilities. “If you’re someone with a disability, having something that other people are using makes you feel like part of the in-crowd.”

For people lacking motor skills, touch screens are more intuitive devices. There is no mouse, keyboard or pen intercepting their communication with the screen. Larger platforms, like iPads, are preferred over smaller iOS and Android devices for ease-of-use and, of course, the cool factor.
Here are four ways that touch devices are changing the lives of people with disabilities:

1. As a Communicator

Before the iPad and other similar devices, using touch-to-speak technology was incredibly expensive, costing around $8,000. Now, it only costs $499 for an iPad and $189.99 for a thorough touch-to-speak app like Proloquo2Go.
That relative affordability has made the technology more available for children and adults that can’t use their voice. With the simple touch of an iPad, a hungry non-verbal person can communicate exactly what he or she would like to eat. Those apps can then be customized with photos or features to suit an individual’s life and needs.
Another option is Assistive Chat, which predicts several sentence completion options. For the most severely disabled people, Yes|No is a simple app that allows individuals to voice their preference in yes-or-no responses.
“It gives dignity back to people who are more disabled,” says Vicki Windham, a special education teacher in the Clarkstown Central School District who trains people of all ages to make the most of their iPads. Windham reviews apps for people with a variety of special needs.
For hard-of-hearing iPad users, soundAmp R amplifies sound in a variety of situations. Users can also record lectures or presentations they want to listen to again later.

2. As a Therapeutic Device

SNApps4Kids co-founder Cristen Reat’s son Vincent was born with Down syndrome, which can also lead to low-muscle mass. While he can walk, Reat describes his son as a Buddha that prefers to sit still most of the time. Throughout his life, Vincent’s therapists and parents have tried to help him be more active. It was not until his physical therapist placed an iPad on a treadmill that Vincent was motivated to walk. He now stays on for nine and a half minutes, interacting with his iPad while he’s in motion.
In addition to increasing his gross motor ability to walk, Vincent’s iPad has helped his fine motor skills. For Vincent, computers and older technology required visual shifting — between a mouse or keyboard and the screen. On an iPad, Vincent can watch as one of his fingers writes directly on the screen to make selections.
Similarly, Noah Rahman has shown motor improvement. After playing the Elmo Loves ABCs app on his iPad, he can write the entire alphabet, requiring sophisticated finger isolation. As a three-year-old, this puts him well above his grade level. “First it was ‘do it for me,’ then it was ‘do it with me,’ now he does it by himself,” says Noah’s father.

3. As an Educational Tool

Years ago, one of Jeremy Brown’s autistic elementary school students picked up his iPhone off his desk and began navigating the iOS with ease. “It’s like a fish to water,” says Brown, a teacher for autistic elementary school students, of his students’ interactions with touch technology.
Brown is immersed in online discussions of technology and special education, moderating the Facebook group iTeach Special Education, collaborating on the podcast EdCeptional and coauthoring the blog Teaching All Students. While use of the iPad in classrooms is not yet approved in his school district, he believes the iPad is a great supplemental method of instruction, estimating 80% to 90% of his students with autism see great results when using iOS devices. Brown hopes his school district and others across the country will approve iPads in the classroom.
While no one advocates replacing traditional instruction, a number of apps do address academic subjects from math to language to reading and writing. In October 2010, Apple even featured an “Apps for Special Education” section in the App Store.
Brown encourages parents to separate their children’s recreational uses of the iPad from those in the classroom. Some students may watch YouTube videos on the school bus but while they’re at school they know Mr. Brown’s iPads are only for education.

4. As a Behavior Monitor

Behavior Tracker Pro is a popular app for parents, therapists and teachers to quantify the behavioral progress of children with special needs. In addition to taking notes, good and bad behaviors can be video recorded and later reviewed. The app automatically turns that input into visual graphs and charts.
High school teacher Vicki Windman notes that the iPad can also be a great way to strengthen and reinforce memory for seniors with Alzheimer’s or memory loss. Still, she warns that touch technology is not a miracle drug: “You’re not curing Alzheimer’s. Parents challenge me all the time — they want a cure. It’s no cure.”
That doesn’t mean it can’t help. Apps like Medication Reminder tell users when it’s time to take medication. Memory Practice, a memory strengthening app, was created for the developer’s mother shortly after she was diagnosed with Alzheimer’s. Windman’s father uses an app called Nudge, which gives him a persistent reminder every fifteen minutes to accomplish lapsed tasks on his to-do list.

Long-Roads Ahead

Despite these successes, SNApps4Kids cofounder Cristen Reat recommends a measured approach. “Just because you buy a device doesn’t mean it’s going to change anything,” she says.
Rahman agrees. He says that viewing the iPad as the solution is the backwards approach. “We are big advocates that the user needs to understand the objectives first before you pick the technology,” Rahman says. “We’re not just putting [our son] in front of an iPad and walking away. That’s the real key.”Image courtesy of Sami Rahman.

Interesting artilce that could offer future opportunities for brain-computer interface.

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BodyWave Technology

BodyWave technology from Freer Logic reads and reacts to brainwaves through
the extremities of the body. The sports armband device collects interactive
feedback for training purposes.

BodyWave reads brain activity through the human body via a uniquely
innovative arm band that houses brainwave sensors that attach to the arm or
wrist. BodyWave's patent pending design monitors the brain's physiologic
signal through the body. Dry sensors acquire brain signal and transfer it
wirelessly to a mobile device or PC. When BodyWave is used with Freer Logic's
3D computer simulations, it can teach stress control, increase attention, and
facilitate peak mental performance.

[I really think they use EMG signals rather than EEG signals - DJ]

Unique Logic and Technology (UL&T), uses BodyWave technology in their Play
Attention product which is advertised to increase student attention, teach
cognitive skills, and improve behavior.

The State of the Science Conference for the RERC on Communication Enhancement (AAC-RERC) will be held on Thursday, June 28, 2012, at the Baltimore Marriott Waterfront, 700 Aliceanna Street, Baltimore, MD. The AAC-RERC State of the Science Conference will be immediately followed by the RESNA conference (June 28-July 3), also at the Baltimore Marriott Waterfront.

Tuesday, December 20, 2011

Zite Personalized Magazine

This post also appears on SpeechTechie as part of Blog Awareness Month!

All month I have been singing the praises of blogs as a route to professional development and therapy planning, and I am ending with a bit of a twist- Zite Personalized Magazine (Free, iPad only for now) an app that allows you to subscribe not to blogs but to topics. Select topics of interest and Zite will pull in posts from various news sources (including blogs) that correspond with your selections. Here's my Zite home page:

Zite works somewhat like music app Pandora in that you can then further customize your feeds by giving a thumbs-up or -down to articles that appear or request more from the author, source, or subtopic. It is easy to share articles by email or send to Twitter, Facebook or other services, making Zite a great tool for participating in your Personal Learning and Sharing Network.

Zite is somewhat more of a leisurely experience than using Google Reader as you don't have a number of unread posts to contend with; just read what you want! Because Zite allows you to set up multiple profiles within the app, it could also be a tool for helping older students do research or explore topics of interest and work on comprehension and language strategies.

Monday, December 19, 2011

The business and culture of our digital lives,
from the L.A. Times

December 19, 2011 | 10:22am

2

IBM is predicting that in the next five years we'll no longer need passwords for email or even ATMs, we'll be able to control smartphones and laptops with our minds, and we may even live in a world without junk email.

Too good to be true? Today, yes. But researchers at tech companies such as IBM are working on bringing these ideas to fruition, which is why the 100-year-old tech giant is including these and other ideas in its sixth annual "5 in 5" report of five technologies "that have the potential to change the way people work, live and interact during the next five years."

Mind-reading gadgets: IBM and other companies are working on devices that you can control with your mind. For example, rather than having to tap on a touch screen or through a series of buttons to place a phone call, someday you may need only to imagine calling someone and a mind-reading phone will make the connection, IBM said.

"If you just need to think about calling someone, it happens," IBM said of its prediction. "Or you can control the cursor on a computer screen just by thinking about where you want to move it."

Mind-reading technology, known as bioinformatics, has already shown up in simple forms from toy makers such as Mattel, and engineers at IBM and other companies "have designed headsets with advanced sensors to read electrical brain activity that can recognize facial expressions, excitement and concentration levels, and thoughts of a person without them physically taking any actions," the report said.

"Within five years we will begin to see early applications of this technology in the gaming and entertainment industry," IBM said. "Furthermore, doctors could use the technology to test brain patterns, possibly even assist in rehabilitation from strokes and to help in understanding brain disorders, such as autism."

No more passwords: Passwords will be left behind as devices instead grant you access by recognizing who you are, IBM is predicting.

"Your biological makeup is the key to your individual identity, and soon it will become the key to safeguarding it," IBM said. "Imagine you will be able to walk up to an ATM machine to securely withdraw money by simply speaking your name or looking into a tiny sensor that can recognize the unique patterns in the retina of your eye. Or by doing the same, you can check your account balance on your mobile phone or tablet."

A bit freaky right? An example of this sort of technology hitting the mainstream can already be seen in the facial recognition technology used in the "face unlock" feature found in the latest version of Google's Android operating system, known as Ice Cream Sandwich.

"Biometric data -- facial definitions, retinal scans and voice files -- will be composited through software to build your DNA-unique, online password," IBM said. "Referred to as multifactor biometrics, smarter systems will be able to use this information in real time to make sure whenever someone is attempting to access your information, it matches your unique biometric profile and the attempt is authorized."

Of course, this idea has and continues to raise privacy concerns as companies collect the biometric data needed to pull this sort of thing off.
"To be trusted, such systems should enable you to opt in or out of whatever information you choose to provide," IBM suggested.People-powered homes: IBM projects that we will soon have the technology to generate the power needed for our homes ourselves.

"Anything that moves or produces heat has the potential to create energy that can be captured," IBM said. "Walking. Jogging. Bicycling. The heat from your computer. Even the water flowing through your pipes."
The ability to collect kinetic energy that is currently untapped is improving, the company said, pointing to its own team of scientists in Ireland who are "looking at ways to understand and minimize the environmental impact of converting ocean wave energy into electricity."

Mobile devices could fill the technology gap: Currently, the disparity between those with access to modern technologies is a wide one, particularly in emerging countries, though it is believed to be shrinking.
IBM is forecasting that over the next five years the gap will continue to lessen.

"In our global society, growth and wealth of economies are increasingly decided by the level of access to information," IBM said. "And in five years the gap between information haves and have-nots will narrow considerably due to advances in mobile technology."

The current, fast-growing adoption in India, an increasingly wealthy and powerful country, is an example of this already taking place, the company said, projecting that as many as 5.6 billion mobile devices could be sold worldwide over the next five years.

"As it becomes cheaper to own a mobile phone, people without a lot of spending power will be able to do much more than they can today," IBM said. ""In India, using speech technology and mobile devices, IBM enabled rural villagers who were illiterate to pass along information through recorded messages on their phones. With access to information that was not there before, villagers could check weather reports to help them decide when to fertilize crops, know when doctors were coming into town, and find the best prices for their crops or merchandise."

Junk mail extinction: Junk mail as we know it today will cease to exist in five years, IBM said.
But, if this prediction comes true, it won't be because companies are sending us less email. Instead, "unsolicited advertisements may feel so personalized and relevant it may seem spam is dead," IBM said. "At the same time, spam filters will be so precise you'll never be bothered by unwanted sales pitches again."
So how do IBM and its rivals envision a junk-mail-free future coming to pass? Real-time analytics will be used "to make sense and integrate data from across all the facets of your life such as your social networks and online preferences to present and recommend information that is only useful to you."

This is important information. You need to protect your iPad from damage if dropped or prevent it from getting wet. Invest in a good case to protect your investment!

Sturdy Cases for the iPad

I give recognition to the QIAT (Quality Indicators for Assistive Technology) list serv for this list of “Sturdy Cases for the iPad”. The topic came up on the list serv with posts generated by experienced AT professionals. It seemed appropriate to share the suggested cases for others benefit:Otterbox Defender Case - This case is what we have been using in our school. Staff has evidenced an iPad with a Otterbox case being dropped from about chest height on a concrete floor and another iPad being thrown on the floor. Both devices survived without any damage to them at all! Available for iPad, iPad2, iPod Touch, iPhone devices.Trident Kraken Case - Constructed from impact-resistant polycarbonate and double-enforced with a shock absorbing silicone inner-sleeve. Corners feature double-thick silicone for outstanding protection against drops and other impacts. Available in different colors for iPad2, iPhone, iPod Touch. About $50 for iPad case.Griffin Survivor case - This case is built for military duty grade protection and listed for extreme-duty. Sounds like it would work for some school situations! Comes in a few different colors for iPad2 and iPhone. Costs listed as $80 for iPad2.Gumdrop case - This company has a variety of cases among which is a Drop Tech series case as well as a Military Edition case that are for durable for rugged use. Available for iPad2 and iPhone. Cost ranges from $60-70 for the iPad case.
Thanks to the QIATer’s for their expertise and time to shared their information on cases on the list serv that I am sharing with you. This was valuable information to have when needing to purchase a “sturdy” case for the iPad for some of the students and individuals that we work with. As an OT this was a valuable list to have when considering dedicating a student with a device that you have invested a lot of money, time as well as ensuring the safety of the user.
Anyone have any additions or comments?
Carol

Tuesday, December 6, 2011

Wonderful and informative article about giving assistive technology as gifts. Although the author is writing about visually impaired gifts, their advice applicable to those with ALS that have communication or physical limitations.

For any of my readers who are not visually impaired, you may be wondering if giving a friend or loved one who has vision loss a gift of low vision equipment, (or "assistive technology" as it is called), is an appropriate gift. I can understand your concern. On the one hand, some of the best gifts are those that make someone’s life better or easier, on the other hand, you may be afraid that this type of gift might be received in much the same way as a book about dieting might be. In other words, you don’t want to insult someone, especially if the recipient is really struggling with the emotional aspects of their vision loss. You might be worried that giving this sort of gift would be acknowledging circumstances that the individual him or herself may not yet be ready or willing to acknowledge.

While you may be thinking that buying a friend this type of gift is about as exciting as giving a housewife a vacuum cleaner, consider your intention along with the particular needs of the recipient to make it a gift that keeps on giving. Here are a few tips that may help you to identify the right gift for your special recipient.

Educate yourself. When it comes to assistive products, there is no one size fits all solution. You may not realize, for example, that different types of vision loss manifests differently in different people. Someone who has retinopathy does not literally see the world in exactly the same way as does a person who has macular degeneration. Therefore, it might be a good idea to take the time to identify the specific needs of your gift recipient. Learning a bit about how their particular disability affects them in day-to-day, real-world ways can help you to choose the most practical solution that is most effective and beneficial for them, as opposed to the latest whiz-bang gadget or gizmo

Examine the packaging. If you are giving a gift to a senior or a person who has a physical disability which may make it difficult to manage the product packaging, the impact of your gift may be lost if the recipient can’t get to it. Look for "frustration free" packaging, or simply prepare the gift in advance if you will be unable to be present at the time it’s opened. remove plastic ties or shrink wrap, slice open the bubble plastic so that the container is easy to handle (you can secure it with easier to manage clear tape), and check out the included instructions. If the gift recipient has low or no vision, and the instructions are printed on paper, your recipient will not be able to enjoy the gift if they do not possess the technology to scan and read the directions. Take the time to record the instructions on tape, or provide them in some alternative format so that it is accessible to the recipient. This extra step is part of the gift, and will be most appreciated.

Add the value of you. If your friend or loved one is having a hard time coping with their changing circumstances, make the discovery of assistive technology a shared experience. Learn alongside your loved one. This will not only reduce the intimidation factor of what they perceive to be a complicated process, but the shared experience will benefit you both

Ask someone who would know. Do you know someone else who has the same disability as your gift recipient? If so, ask their opinion. Is this the best version of this particular product? Is it compatible with their current technology or equipment? Is the product or gadget as effective as you believe it could be? Will it do what the manufacturer says it will do? Is there a more or less feature-rich version of this gift that would be more appropriate? If you do not know someone who shares your loved one’s disability, go online and seek accessibility consultants or experts who will be glad to help. there is far more information available than you may realize. If you’ve come this far, it’s easy to continue to seek help. Just type "assistive technology gifts" or "low vision aids" into your favorite search engine, and explore the results. You’ll be amazed at the choices. You might even discover that instead of buying an expensive gadget, there are innumerable ways to make existing items more accessible for people with disabilities. Sometimes, keeping things simple can be the best solution of all.

One word of caution. When it comes to the notion of improving a person’s quality of life, ask yourself if you are really the best judge of what that is. Sometimes, there can exist a very fine line between the desire to help and the desire to control. Consider, for example how you might feel if someone concluded that your life was inadequate, and imposed all sorts of solutions that you did not want or need? What if, say your real estate agent decided that you didn’t need such a big house, it is unnecessary, and therefore you will only be shown one bedroom houses? Keep in mind that there are still people out there who fail to see the necessity of a computer or a cell phone. As foreign an idea as that may be to you, they do not feel their life is any worse for the lack.

On the other hand, a person who has a disability might really appreciate your contribution to what would otherwise be a purchase that is financially prohibitive. The market for assistive tech gadgets is far smaller than that of the market for say, the latest hand-held device that has an "i" in front of the name. Consequently, assistive products specifically for people with disabilities can be far more expensive than the mass-market counterparts. If you are considering a gift certificate, check out the online retailers who specialize in these products. Most offer gift certificates, and will even accept phone orders, which may be preferable for someone who does not yet have an accessible PC.

Good communication and a little extra investigation will yield the best gifts that your friend or loved one will use and enjoy, and you may give the best gift of all…the gift of love of learning, new experiences and fresh insights as to the exciting possibilities that await.

Caregivers want technology that can help facilitate the care of loved ones. Not only can physicians provide those tools, they also can benefit from them.

Pulmonologist Scott Manaker, MD, PhD, said that when elderly patients come for their first visits and are accompanied by family members, he begins the conversations with the relatives by determining when and how he can share information about the patients' health.

With more than 29% of the U.S. population acting as a caregiver to someone else, chances are that physicians eventually will be faced, as Dr. Manaker is, with questions about how they can work with caregivers to ensure the health of the person receiving care.

The majority of caregivers spend an average of 20 hours per week providing care, in addition to holding down a full-time job. To help make things more efficient, many are turning to technology that not only will supplement the care they are providing in person, but also will help them stay organized and connected with the care recipient's physicians or fellow caregivers.

The more physicians can help get the needed technology to caregivers, experts say, the easier those caregivers' lives will be. Likewise, the more engaged the caregiver is, the better the outcomes for patients.
"I find great relief and comfort when the family is involved," said Dr. Manaker, associate professor of medicine at the University of Pennsylvania Medical Center. Having a caregiver working as an ally has made it easier to talk to aging patients facing tough decisions, especially patients who are reluctant to give up their independence, he said.

Gail Hunt, CEO and president of the National Alliance for Caregiving, said all physicians should be having conversations with caregivers on how they best can support each other. Both physicians and caregivers have valuable information that can help the other one meet their obligations to the patient.

What caregivers want

A study published in January by the National Alliance for Caregiving and UnitedHealthcare found that caregivers think technology can help save time (77%), manage the logistics of caregiving more easily (76%), increase feelings of effectiveness as a caregiver (74%), reduce stress (74%) and make a care recipient feel safer (75%).

"If we have a caregiver who is unable to provide care, or is over-burdened, or overly stressed out with care, there's a much greater likelihood that the patient will need to be placed in some sort of facility, which is much more expensive and costly," said Sarah Czaja, PhD, scientific director at the Center on Aging at the Leonard M. Miller School of Medicine, University of Miami.

Caregivers spend an average of 20 hours a week providing care.

Czaja, who has been involved with several research projects aimed at providing technology to caregivers, said caregivers often don't know about resources that may help them.

The help caregivers are looking for can be simple moral support through online support groups, ways to communicate directly with the doctor electronically, or more advanced technology that can be the eyes and ears watching over that patient when they can't.

Physicians carry the greatest influence in prompting caregivers and patients to try a new technology or tool, according to the National Alliance for Caregiving survey. Among the issues that technology is helping to make easier to manage:

Coordination of care. Care recipients generally have more than one physician treating them, so caregivers are tasked with making sure not only that the care recipient makes it to all scheduled appointments, but also that those appointments are productive.

Seventy-seven percent of caregivers want access to the electronic records of the care recipient to obtain information such as health history, medication lists and test results, according to the NAC survey. Many physicians with electronic medical records have online patient portals where patients or their caregivers can download this information. With this access, caregivers can share records from one physician to the next.
The ability of caregivers to log onto the system and retrieve lab results or care records also means better practice efficiency, Dr. Manaker said. There are fewer phone calls and staff time dedicated to tracking down that data, he said.

Nearly 30% of the U.S. population acts as a caregiver to someone else.

When Dr. Manaker meets caregivers for the first time, he makes sure patients make all necessary authorizations to have information released to caregivers.

He has had uncomfortable conversations with well-meaning relatives who want to obtain information to help their loved one, except that certain caregivers were never authorized by the patient to receive the information.
Whether the caregiver is accessing information over the phone, by email or through a patient portal, physicians must do their part to make sure that exchange complies with the Health Insurance Portability and Accountability Act. Not only does the physician need to obtain permission to share data with caregivers, but the data must be shared securely. Though emailing may be convenient, if it's done on an unencrypted or open network and identifiable information is being sent about the patient, the physician is at risk of a HIPAA violation.

Medication compliance. Studies have found that chronically ill patients are noncompliant with their medication about half the time. Some can't afford to fill their prescriptions, but others don't remember to take their medication. For physicians, caregivers can be the best resource they have in ensuring that the medications they prescribe are actually taken by the patient.

With a more accurate assessment of medication compliance, doctors will find it easier to determine the effectiveness of a prescribed treatment in case changes are needed. Medication tracking can be easy for caregivers living under the same roof as the care recipient, but for the more than 50% who live elsewhere, medication compliance is trickier. There are several tools on the market that physicians can suggest.
Seventy percent of caregivers not living with a care recipient say a system that would remind the patient when to take medications and dispense pills at the right time would be beneficial, according to the National Alliance for Caregiving survey. There are tools on the market that send audio reminders to the patient to take medications. An alert is sent to the caregiver if a pill hasn't been taken. There also are smart-pill technologies in development that would send alerts to caregivers or physicians when a pill is swallowed.

Chronically ill patients are noncompliant with their medication about half the time.

Tools that require action on the care recipient's part must be affordable and easy to use, Hunt said. Physicians can play a great role in finding the right tools for these patients and their caregivers.Remote monitoring. The longer patients can stay at home and out of long-term-care facilities, the better. Often the key to keeping patients at home is the ability to monitor their conditions between physician visits.
Seventy percent of caregivers said remote monitoring devices that collect data such as vital signs, blood pressure and blood sugar levels, and send that information to physicians or care managers for analysis, would be helpful, according to the National Alliance for Caregiving survey.

Adam Darkins, MD, chief consultant for the Dept. of Veterans Affairs Office of Telehealth Services, said chronic patients generally are not seen more than once every few months in a doctor's office. "It often happens that in the clinic, all is well, but then they deteriorate two weeks before, or six weeks after [the visit]. And when that happens, they get their right to an urgent appointment by being an [extreme case]," Dr. Darkins said. The VA decided: Instead of putting all the resources into a clinic visit, why not put them into monitoring people?

"A key piece to doing this right from the start was making sure the caregiver was involved," Dr. Darkins said.
The Veterans Health Administration is often viewed as the gold standard when it comes to telemedicine and home monitoring, Hunt said. Through remote monitoring, the VA has reduced the days in the hospital by up to 30%, according to Dr. Darkins, and has increased patient satisfaction by up to 70%.

With the right technology, caregivers can feel empowered to take on the task of monitoring a patient, but there must be an assessment of the caregiver's ability to care for the patient. That role of assessing the caregiver and making sure they understand their role is often one that falls on the physician.
Finances are often barriers with this type of technology, both for caregivers and physicians. If physicians were to offer it, they would need staff to manage it. At the VA, the system has a dashboard-type display with a red flag system. A care coordinator within the physician clinic monitors those flags for needed interventions. Another option for physicians is educating caregivers on how to recognize red flags on their own if the monitoring is being done manually and how to know when to call the physician's office for advice.

Explaining technology

Although cost is often cited as a barrier to physician technology adoption, the same is true for caregivers. But despite their concern about costs, nearly half of caregivers surveyed by the National Alliance for Caregiving thought technology could help save money.

Hunt said physicians should educate caregivers on technology and its benefits and help them understand that many technologies are affordable.

Of those surveyed, 88% said that if a health professional involved with the care of the patient explained that the technology would help, caregivers would be more likely to try it. And 80% said they would be more likely to try a technology they were shown how to install and use.

"Technology has a lot of potential ways to aid both the caregiver and the physician in terms of management of care," Czaja said. "They must work together to identify the options that work best for everyone."

ADDITIONAL INFORMATION:

ACOs could change caregiver role

For many caregivers, one primary responsibility is coordinating the care of their loved ones. They schedule appointments with each specialist and manage the patient's medical records so each doctors knows what the other one has done.

But that role could change if the care recipient becomes a patient of an accountable care organization.
Under the ideal ACO model of shared responsibility for the patient, care coordination would fall on the organization acting as the head of the ACO, or the patient's medical home, which would be responsible for the care plan of each patient. But more work is needed to ensure that patients remain at the center of those plans.

James Lee, MD, medical director for hospital efficiency at the Everett (Wash.) Clinic who headed that organization's ACO demonstration project, said that in an ideal system, a precise care plan for each patient would be crafted by team members at the patient's medical home. That plan would be transmitted to every member of the patient's care team, including the caregiver.

Instead of a caregiver taking on the responsibility of reconciling the medical records of each physician the patient sees, all the records would be in a shared electronic medical records system and viewable by the caregiver. The National Quality Forum, Dr. Lee said, "recognizes IT as the glue that ties caregivers and patients and physicians together." The challenge is to "improve the IT piece so that it is transparent and bi-directional."

Dr. Lee said that even though ACOs have the technology in place that would allow the care plan to be visible to all parties within an EMR, "today, we don't have a consensus on what patient-centered care plans should look like."

"We have made some progress, but a clear care plan will be necessary to give caregivers more information," he said.

On Oct. 20, the Centers for Medicare & Medicaid Services released the final rule describing the Medicare Shared Savings Plan program being launched by CMS in 2012. As many as 270 ACO networks are expected to participate in the program that will allow them to share bonus money for achieving certain cost-saving goals.

Caregiver access needs to follow HIPAA

Caregivers need access to information to make informed decisions. But regulations in the Health Insurance Portability and Accountability Act don't make exceptions for caregivers, even if their intentions are good, if they have no authority to view a patient's medical chart. Therefore, physicians must be careful when working with people seeking information.

The best step physicians can take in ensuring patient privacy is to receive express consent from patients on who they want to grant access to, and exactly what that person is authorized to see.

Betsy Hodge, an attorney in the health care practice at Florida law firm Akerman Senterfitt, said doctors should make clear to patients exactly what someone would have access to if the patient shared login and password information on a physician portal. Even better, she said, is if a caregiver had his or her own login information and access to only the information the care recipient feels comfortable sharing.

Attorney Rene Louapre, who works at the New Orleans offices of McGlinchey Stafford, said physicians should have a paper trail of patients grant-ing caregivers authorization to access records.

Hodge agrees, saying that physicians should try to be as specific as possible on whatever form the patient may sign. It should detail exactly what will be disclosed, and the patient should write down names of everyone with whom he or she is grant-ing access. Those forms should be reviewed with the patient often, as caregivers often change.

Reprinted with permission from the ALS Association, Greater Philadelphia Chapter. Originally published in Pathways, a patient services newsletter.

One of the first concerns that we are asked to address for many of our clients is the need for access in and out of their homes. For individuals who use a wheelchair or scooter, a ramp may be necessary. For other clients who use a cane or walker, steps with a lower rise and deeper tread may be more useful. And for some clients who do not have the space for a ramp or extended stairs, other options such as a platform lift may need to be considered.

A ramp is an inclined path between two surfaces of varying heights. The maximum slope of a ramp in residential settings in most municipalities is no greater than 1:12 (no more than 1 inch of rise for every 12 inches of run). This is the same maximum slope permitted in public areas as specified in the Americans with Disabilities Act Accessibility Guidelines. Although this slope may be allowable by zoning regulations, it does not ensure that a specific client will be able to propel themselves safely up or down a ramp with this degree of incline. A simple rule of thumb is; a shorter ramp will cost less money, but it will be harder to use because the angle is steeper. For example, if the stairs are 24” in height, then a proper ramp should be no less than 24’ long. This allows a person with “average upper body strength” to be able to get up the slope by themselves. Ultimately we all want the client to be successful with using the ramp.

Some clients may need a more shallow slope (1:16) on a ramp to be able to push their own wheelchair due to upper body strength or cardiovascular limitations, while other individuals do not have the strength to push or manage a wheelchair for another person (such as their spouse or adult child) at that angle, and may require an even more shallow incline. A sloping walkway with a 1:20 incline is not considered to be a ramp, and does not require the guard rails and hand rails that a ramp needs for code-compliance.

Another important consideration in a successful ramp design is the placement of a platform at the doorway. It can be difficult to get a storm door open, or to get the house door

unlocked, while keeping yourself from rolling back down the ramp. A good design should include a platform or landing at the door entrance. The proper platform placement allows the user to get next to the door, and allow it to swing open with maximum ease. It is most valuable to observe the client to determine the amount of space needed, but at least 6 feet of space for approach and maneuverability is desirable.

Also, long ramps should include a strategic place to take a rest. Most guidelines suggest that a ramp should have a level rest area for every 30 feet of incline run.

Some clients who are able to walk with the support of a handrail, a cane or a walker may prefer a ramp to steps. Many individuals find the slope of a ramp to be a challenge to maintain their balance, or to be more difficult to ascend/descend when using prosthetic limbs. A rehabilitation therapist (occupational therapist or physical therapist) can assist in determining the best options for the client to be able to safely enter and exit their home.

Features of Ramps

Each ramp is unique once the following features are taken into account: the vertical distance that the ramp ascends/descends, the slope and length of the ramp, the duration that the ramp is expected to be needed, the materials used to construct the ramp (as well as the surface texture of the ramp), the placement and design of the handrails, and the aesthetic considerations.

As discussed above, the slope of the ramp is determined by the vertical distance that needs to be traversed, as well as the distance or length of the ramp. Often, measuring the step risers leading to the door is not enough information to determine the ramp length. In locations where the ground is not flat, it is most important to recognize that the “difference in height”, from where the ramp will start at the ground surface, to the door threshold, is what determines the ramp length. Often, the ground slopes away from the home. For larger ramps, use of a level or measurement devise is necessary to determine the elevations of the terrain. A series of scenarios may be necessary to determine the most efficient ramp designs. Seeing the ideal design is not always obvious at first.

If there is not sufficient room to accommodate a ramp with a 1:12 slope, or if the ramp is so long that the user can not use it due to fatigue or limited strength/endurance, other options such as a platform lift, exterior stair lift, exterior elevator or other devices may be needed.

Some individuals will need a ramp for the rest of their lifetime, due to conditions that are not expected to improve over time (such as a spinal cord injury) or may become progressively more debilitating (such as

multiple sclerosis or rheumatoid arthritis). Other individuals may need a ramp temporarily, as they recover from orthopedic surgery or regain mobility after a stroke. Consultation with rehabilitation professionals may be useful in helping the client determine if they need a permanent or temporary ramp.

Once the decision has been made regarding the permanency of a ramp, the many options of materials need to be considered. Wood, concrete, aluminum, steel and other options are available.

Cost Considerations

Steel is always the lowest in cost. Wood can be the lowest if the labor is donated or provided by a family member or friend, or the highest in cost, if constructed by a contractor or carpenter.

From lowest to highest cost:

Wood

Steel

Concrete

Aluminum

Installation Considerations / Potential for Shifting Over Time

Concrete frost footings are required for most wood ramps. As frost heaves or settling occurs, some wooden or concrete structures may become misaligned. Steel and aluminum ramps are easily realigned as they are designed with adjustable support structures.

Maintenance Considerations

Metal may rust depending on the finish, and some touch up is occasionally required.

Wood needs to be regularly treated with a wood sealer to prevent splintering and warping.

From lowest to highest maintenance:

Concrete

Aluminum

Steel

Wood

Safety Considerations

Wood may rot or warp. Wood, concrete and aluminum are all solid surfaces and allow moisture to

accumulate and freeze in colder climates. Wood and concrete may become slick when wet, if not treated with a non-skid finish. Steel has a gripping texture, making it non-skid. Steel can also have an open, pattern ramp surface allowing moisture to pass through, eliminating the danger of ice film.

Durability / Permanency Issues

Wood can rot, while steel and concrete can last for ages. The nonskid grooving on an aluminum ramp surface can erode over time, becoming smooth and slippery in wet weather.

Least to most durable:

Wood

Aluminum

Steel

Concrete

Aesthetics

Depending on the property, wood can match an existing deck, steel can look like wrought iron; concrete can match a walkway.

Building Permits Issues

Wood and concrete are permanent modifications to the home, requiring permits. Steel and aluminum modular ramps are classified as reusable, durable, medical equipment (DME) not requiring permits. Check with local building codes before choosing ramp materials.

(Information adapted from American Ramp Systems)

The placement of handrails may be dictated by codes, but the options for materials, shapes and finishes may greatly affect the usability of the finished product. An easy-to-grip handrail is oval-shaped, 1” – 1 ½” in diameter (depending on the hand size of the user), and smoothly finished, but not slippery when wet. Some users may grip the handrail from below and pull on it to propel their wheelchair up the ramp, others may use an overhand grasp to slow the descent down the ramp. Each user will approach the handrail differently, based on their needs. Observing the client using a ramp may provide valuable cues as to how they use the handrails.

Clients may choose that their ramp not include handrails. However, at a minimum, turning platforms should have handrails for safety. Curbing on the sides

of ramps may be required by code, but should be encouraged if not required. Curbs can keep a mobility device (and the user of the device) from going over the ramp edge. Injury and liability can result from omission of these safety features.

Aesthetic considerations include the placement of the ramp, the style of the ramp and the integration of the design of the ramp with the residence and the surrounding neighborhood. The decision to have a ramp at the front door may raise personal issues. In some areas, a ramp may be interpreted by others as a sign of potential weakness/frailty, and may put the occupant at risk for crimes of opportunity. In other settings, condominium or neighborhood association regulations may prevent the owner from altering the approach to the front door. Other possibilities for ramp placement include a side or back entrance, or through a garage. Often (especially on older homes), the back door is much narrower than the front. This can be an issue for the person maneuvering a wheelchair through a tight space.

If there is a storm door, piston dampers are often mounted on the door jamb, to assist in closing the storm door. When present, I often suggest moving them to the top of the door, or suggest removal of the storm door.

Many individuals consider installing a ramp going into the laundry room. Often this can be problematic, as the washing machine and dryer may be obstructing the path the individual needs to use. Careful attention needs to be paid to these details. These laundry room entries often lead to a hallway that is too narrow for a standard wheelchair to turn. This can result in damage to the walls and trim of the home. Wider doorways and hallways often become necessary; especially for clients who have not yet mastered the skills needed for precision wheelchair or scooter mobility.

Simple low cost solutions can include replacing the existing door hinges with “offset” hinges. These cleverly designed hinges can add up to 1½” additional clearance by getting the door outside of the jamb when opened.

The vertical distance that a ramp needs to traverse may be reduced through changing the topography of the site. Building up the height of the driveway or

yard may reduce the length or slope of the ramp. Working in conjunction with a landscape architect may offer innovative solutions to increase access to/from the home, while maintaining or improving the attractiveness of the site.

Installation Considerations

Other factors in determining the most appropriate location and materials of a ramp include terrain, climate (need for overhang or snow and ice consideration), maintenance, cost (initial and lifecycle considerations), and the cost of other options (such as a platform lift). Ramps require less upkeep than platform lifts, stair glides, or elevators. Lifts can take up less space, but initial costs can be expensive. Platform lifts have specific requirements for the concrete base pad and electric. If a concrete pad is not installed correctly, ongoing service problems will be likely. Ongoing maintenance contracts are a good idea for these electric devices. Replacement parts for an older lift can become difficult to locate. Exterior stair glides, similar to their indoor cousins, can be an affordable access solution, especially for city row home situations. It is recommended that clients consult with a care provider (occupational therapist or physical therapist) to determine if a stair glide is an appropriate solution for the client’s needs.

Collaboration Results in Better Client Outcomes

For clients who need home modifications that include getting in and out of the home, especially for those clients that use wheelchairs, scooters, cane, walkers or other mobility devices, a collaboration between remodeler and an occupational therapist can determine the best solution in partnership with the client. Assisting the client in selecting between a ramp, alternative stairs, or lifts/stair glides/elevators requires knowledge of the client’s current and projected abilities as well as an understanding of the benefits and features and potential challenges of the various options. A team approach provides the best options for the client to promote their safety and independence, and ensure their satisfaction with the modification services that are provided.

Friday, December 2, 2011

A few Pennsylvania Hospital ALS clinic team members recently attended in-services on two standing lift devices--the EZ pivot and molift models. The instruction we received at these lectures confirmed that these devices are not the best option for most PALS (Persons with ALS).

One drawback of these devices is that they can only be used once the PALS is already in a seated position. The straps that are used to operate the device have to be donned while the person is already sitting in a chair or sitting at the edge of a bed. These devices cannot safely be used for moving PALS from a lying position in the bed to a seated position at the side of the bed. This activity can be very difficult for PALS who have significant weakness.

Even if the person being transported is able to move from a lying position in the bed to a seated position at the side of the bed, the straps on any of these lifting devices are difficult to don while seated. The straps have to be wrapped around the trunk, legs, and, in the case of the EZ pivot, buttocks of the person being transferred. Any PALS with decreased strength in the trunk and arms may find it difficult to maintain his or her sitting balance at the edge of the bed while a caregiver places these straps around them.

Another problem with these devices is that they are not made to be used with someone who has significant progressive weakness in the legs. They are designed to be used with individuals who have moderate weakness in cases where strength is either stable or expected to be regained. These devices will not work properly if the person being lifted is unable to stand partially or bear weight through his or her legs. As a matter of fact, the vendor of the molift said the product was not appropriate to use on persons who cannot or should not stand on their own, without the lift. There is the potential for injury if a person who is unable to bear any weight through his or her legs uses one of these lifts.

In addition, none of the vendors we spoke to were able to get their devices paid for by insurance.These are costly items and it is rare to find a company that will rent them to you. In some cases, insurance will give you an allowance for a lift device, but you would still be left with a bill of several thousand dollars after the allowance. Most vendors will make you pay the cost of the entire device upfront and then have you haggle for the partial reimbursement with your insurance.

The EZ pivot had a few additional issues that would make it difficult to use - it requires much effort for the caregivers when lifting PALS, as it is not hydraulic. Also, it puts the person being lifted in a position that closes off his or her chest and diaphragm (which could be a problem for PALS with respiratory

difficulties). In addition, the EZ pivot straps would be extremely difficult to put on a person who had poor trunk control even if they were seated in a supportive wheelchair. A PALS who trialed the EZ pivot in his home for a few weeks said it was just too cumbersome for his wife to strap him in it so he returned the device.

There are a few positive things about these machines. They are less physically taxing than a dependent lift for the caregiver when going from chair to chair. They also give easy access for hygiene with toileting. However, these benefits do not seem to outweigh the drawbacks.

If you need a mechanical lift to assist with transfers, a hoyer lift is usually more appropriate. Use of the hoyer lift involves placing a sling-like piece of fabric under the PALS. The sling and person are raised using a hydraulic lift. The person is then pushed over to the next surface and lowered down. With a little practice, the lift can easily be used with the assistance of only one caregiver. This type of lift is almost always covered by insurance. In addition, this lift assists with moving between a lying down and seated position. Plus, the sling is much easier to put under the PALS than any of the standing lift devices. The actual space the hoyer takes up is very similar to the standing lifts.